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‘There could be a cure one day so it’s better to be strong and ready for it’

Despite undergoing three operations and now using a wheelchair, college is still very much on the agenda

Tue, Apr 1, 2014, 01:00

Georgina O'Halloran

Emily Felix at her home in Gowran, Co Kilkenny. Photograph: Dylan Vaughan

Emily Felix (second from left) at home in Gowran, Co Kilkenny with her mother, Marie, sister, Anna, and her father, Charles. Photograph: Dylan Vaughan

My name is Emily Felix and I am 16. I was diagnosed with Friedreich’s Ataxia when I was 12.

It was September 2010 and I had just started in First Year at Loreto Secondary School, Kilkenny. At the start I was in denial. I didn’t think anything was wrong. I kind of shrugged it off.

But as it got worse it affected daily things like walking into school, carrying bags. When I told my friends they were great and they would help with anything, but it was hard for them to understand. From the outside I hadn’t changed at all, so it was hard for them to get their heads around it.

My first spinal surgery for scoliosis was in August 2012 at Our Lady’s Children’s Hospital, Crumlin, just before going into Junior Cert year. It lasted nine hours.

Lower back painI went back to school in November and things were going well, but then I had a lot of pain in my lower back. I had to have a second operation in May, two weeks before my Junior Cert and so I did my exams at home in my pyjamas.

I was on loads of pain medication. Initially I thought I would not do the exams, but I had worked so hard that year that I thought it would be a waste not to. On the last day, I was really sick and so I did my Science paper in bed.

I was so happy when the exams were finished. It was such a relief. I slept loads and the next day we went to Crumlin hospital. That’s when I found out I was going to have a third operation.

I had been having pain during the exams, but I didn’t really think there was anything wrong. I was really fed up at the time, but I just said I had to do this. I had a feeling it was going to be worth it.

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The operation took place in July last year and I haven’t had pain since. I got my exam results in September. I got six As, three Bs and one C. I was so happy.

Because nobody has heard of the condition, they assume it affects my intelligence, but it doesn’t. I’d like people to recognise that it’s nothing to do with my brain. I’m just a normal person.

Wheelchair useSince the start of this year I use my wheelchair at school. At the start I hated it. I saw it as a sign of defeat, that there was nothing more I could do and that the condition was taking over. Then I saw there were lots of plus sides . . . that it helps my independence. I go from place to place without having to depend on anyone.

I’s easier for school friends and students as well. Now they see the wheelchair and realise I have a condition, but then they forget about the chair. They realise I’m still the same person.

This year I’m in Transition Year in school and you get to do a lot of different things you would never have had the opportunity to do otherwise. I got into fashion design and I won a competition in Kilkenny Fashion Week for the dress I designed.

We’re doing a project as part of the Young Social Innovators programme at the moment called “In Your Wheels”, which is about physical disability.

All of the class had to spend time using a wheelchair to see what it was like. I want to make a difference to people’s attitudes towards physical disability.

I want people to realise that we’re just normal people and shouldn’t be treated differently. The only difference is that we need some supports at times, but we’re still the same. We just have different needs.

There is a girl in my school who also has the same condition. We talk and it makes it easier to know someone is in the same position.

After school I want to go to university. I think I’d like to study business or science, maybe at Trinity, but I’m not totally sure yet.

My condition is not going to hold me back and keep me from living away from home. I’d like to travel around the world and I’d really like to go back to America.

I went to Disneyland, Florida with my parents and my sister with Make A Wish Ireland in September and and it was amazing. Everywhere was much more wheelchair accessible than here.

At the moment I’m rehearsing for a pantomime and I do hydrotherapy twice a week and try to do a bit of walking everyday. It’s important to keep your muscles working. If I stopped, after a while, I wouldn’t be able to walk. Some people would just say to stay in the wheelchair and stay there all day. I think it’s better to keep strong.

There could be a cure for Friedreich’s Ataxia one day. There are loads of signs [of a cure] and even if it’s 20 years away, there is a chance, so it’s better to be strong and ready for it.